Hi, I found this site when looking for answers on whats wrong with me and just need someone to talk to and need to vent. I got diagnosed with myopic cnv in march in my right eye, the condition was never explained to me properly & when i asked just got told the injections will sort it. 6 weeks ago i lost central vision in that eye. It took 6 weeks to get someone to look at it. Had a scan yesterday (finally) to be told the scarring on my retina is permanent, i asked if i had been seen when i first contacted them would i have lost my central vision to be told "thats unsure and hard to tell now but i don't think so". I also had a small bleed which i had injection for. whilst the doctor was looking at my scans the receptionist called him out and said she needed to talk to him about the patient, that would be me whilst sitting there 🤨. After he continued to look through scans and then said i had PIC and it was on my scan back in may. Yet again i asked what that was and what happens now and why was i not told. Yet again it never got explained properly when asked and said its kinda the same thing. Sorry for the long post. I'm very confused and angry and don't know where to turn or what i have actually got wrong with my eye and just made to feel small and an inconvenience for asking questions. I do not trust anyone about my eyes anymore. 😔. I don't know where to go from here.
Confused & angry: Hi, I found this site when... - Macular Society
Confused & angry
Hi, sending you a hug X I'm sorry you've been treated that way and personally I would complain to PALS about not being seen for 6 weeks after losing central vision. That's completely unacceptable even with covid restrictions. Contact the Macular Society - their website has a telephone helpline and they are very good.
Their site itself has lots of info on eye conditions or they can advise you, also have counsellors and buddies. They can help you deal with your eye clinic too if you need support with that.
Once you get proper info and know what you're dealing with you can take steps to help yourself. Sometimes we have to make a fuss and push to be treated as we deserve, but don't be fobbed off.
There will be folk on here who have your condition and I'm sure they'll post replies soon and hopefully that will help you feel less alone.
Sending best wishes going forwards x
Hi, Thank you so much for your reply and your advice X. This whole process has been unpleasant from the very first appointment. Hopefully i will get the answers i need soon. Just need to get my emotions in check first before making some calls to people. X
Don't worry, the mac soc are used to us being emotional 
Sight problems are known to be akin to bereavement emotionally so be kind to yourself x
Just so you know, if you find you have no trust in anyone at your local eye clinic anymore you can ask your gp to refer you to another hospital clinic if you want , it's called " any qualified provider". A friend of mine has just done that and she is much happier.
Some of us have also paid to have a private assessment as a 2nd opinion we feel we can have trust in but of course that can be pricey (around £250) and one still has to find the right consultant. Moorfields is the famous hospital you can find one, I used a professor in Guildford for my hubby, I'm sure others would also have recommendations. You can still be treated under the nhs afterwards 
Hi, i probably will look into going somewhere else if i can but all depends on where. I will also ring and chat with the clinics liaison officer so these things do not happen to other people. From where i live i think Moorfields would be the next nearest, so hopefully someone there can help. I have never seen the same consultant where i have been and the whole process feels very impersonal and like a conveyor belt of one in, one out. Thank you so much for chatting to me and your help 🙂 x
Interested to know are you in the Uk ? Looked but could not see in your post .
Hi Daves_mum
So sorry for your experience and what has happened to your sight. I know how scary it is.
I had a similar experience. I went to the optician with a small blind spot in my vision and was (after initially being told it was nothing) referred to hospital. A very uncaring doctor told me I had myopic macula degeneration and she couldn’t tell me whether I would lose my sight in the future.
I sought a second opinion and was told I had PIC. It is a rare auto immune disease where the immune system attacks the back of the eye causing loss of vision and sometimes bleeding which results in further loss of vision. Future outbreaks can be halted if they are caught early enough and treated with steroids. The condition can be self limiting which means there may not be any further outbreaks.
When I was first diagnosed, I didn’t know all this, my blind spot was tiny and I was told it may not get worse. A few months later I noticed a deterioration went to the hospital but was told not to worry and sent home. A further episode saw me lose a lot of the vision in that eye. I too believe if I had been treated then some of my sight may have been saved.
I now attend a macular clinic every six months ( pre Covid). It was initially more frequent and I did have injections to halt the bleeding.
I was alerted on this site to a specialist in this condition
I now attend his clinic every six months at Birmingham Hospital. It is a long trek from where I live but so worth it. Professor Deniston specialises in auto immune disorders of the eye and I find the reassurance of having a regular check up by someone who is looking specifically for changes that happen in an eye with PIC. It is too late to save the vision in my affected eye but my other eye is so far unaffected and life continues as normal.
I don’t know how much of your vision you have lost but I do know how worried and scared you will be feeling.
Hi, At the moment its the central vision in my right eye, i can not see the black dot on the amsler grid or see the eye chart, the consultant on Saturday said the injection i had then may help me get back a couple of lines on the chart as i still had a small bleed. I'm just annoyed that it seems to have been missed and as i have never seen the same consultant, i have had half a dozen different consultants look at my scans from the beginning. Is myopic cnv the same as myopic macula degeneration? Is PIC the same as above? Will it get worse? Should i have been put on steroids? I have so many question i just need someone to answer them for me and talk to me like i'm a human being and not just the next patient to get through. I may have to trek up to birmingham to get some answers unless someone at moorfields can help. The consultant asked what job i did and i said pc work, he just said " thats not good". My work have been amazing and asked me what they can do and put in place to help me but most of my work is computer based and spread sheets and cause i also get very bad dry eyes my left one struggles at times too, so don't know how much longer i can continue doing pc work or my job. Sorry for going on, just so many questions going on in my head. Thank you for replying to me and giving me hope of possible normality going forward. 🙂
Keep checking on this site. I think it is wonderful. xx
Hi Dave have you been in contact with the Macular Society they have an advise and information line 0300 3030 111.
Hope that helps x
Hi, i have just finished a phone call with them. They were very helpful and knowledgeable on my conditions and how to go forward with my eye clinic and my work. Thank you x
That's great Dave ...best of luck to you.
Totally agree with Eyesright that if you can afford it, pay for a second opinion. That way you’ll get the answers you need. NHS consultations are unfortunately, way too short because there just isn’t enough time. If you do decide to do this, write out a list of questions and if possible (given possible Covid restrictions) take someone with you who can jot down the answers. I don’t know about you but my brain can’t take in all the information I’m being given at the time as it’s somewhat stressful!
I also think you should consider going elsewhere - unfortunately all NHS hospitals are not equal. If you decide to do this, do as much research as you can and check that they are still doing regular appointments. Also the nearest hospital on the map might not be the easiest or quickest to get to. When you’ve narrowed your choices down, phone them and ask for the clinic liaison officer or the person in charge of admin. This might help you get a better feel of the clinic.
Hang on in there - this forum is full of caring, supportive people and the Mac Soc is superb!
Hi, I have spoken to my clinic and will be having the lead consultant ringing me to hopefully explain a bit more to me and what happens going forward, which is better than having to google my diagnosis. Also will be asking if further procedures will be put in place so what happened to me will not happen to someone else. I have been blown away by the info and support on here. Thank you x
Hi. PIC is a rare autoimmune disease that affects mainly women with high myopia. The symptoms and effects are similar to myopic macula degeneration. CNV can occur when new unstable blood vessels form.
If you are diagnosed with PIC you may wish to contact Prof Denniston’s secretary on 0121 371 6905. These diseases of the eye are his speciality though there may be a similar specialist at Moorfields.
He is a most patient and reassuring man and always gives as much time as you need. His support team are very helpful and always willing to answer your queries.
Hope you get the answers you need. As has already been said losing sight is like a bereavement. Good luck.
Hi Dave's_mum. What can I say? This is an absolute disgrace, I feel so sorry for you, you've have been treated really badly and it does warrant a complaint to PALS as eyesright has said. It's good that you have rung the Macula Society and I hope they can help you sort this awful mess out. All the best to you. x
Hi Daves_mum,
So sorry to hear about your issues with your eye. Did you get anti vegf injections at the start of your mis-diagnosis with myopia cnv and how was the recovery? Or did it not respond and got progressively worse?
I was diagnosed with myopia cnv in Nov, and received lucentis injections shortly after. A lot of my vision has returned, the swelling has gone done by 90%. I just had another jab yesterday. I am interested in your experience as I have an undiagnosed autoimmune disease, having 'undifferentiated arthritis in my right hand for a year but became my hand is not inflamed for the last 4 years. I am wondering if my cnv could be related to an autoimmune condition as well.
I hope you get a good retina specialist to help you with your eye condition. I went to 3 specialists before I settled on one. A lot of money spent but sight is so precious!
Hi, i had a course if 3 lucentis injections which did stop the bleed and vision got better, i noticed a change in august had scan got told possible scarring and very bad dry eye but could see no new bleed. Then begining of november it all started again. I would say yes the the first 3 injections helped my sight, not sure about swelling as never been mentioned to me. As far as i am aware i do not have anything else other than severe hayfever. I got told my myopic cnv was something that has happened because of my short sightedness and astigmatism, my mum got told when i was little that i would probably start losing my sight in my 40's so just went with what i was told. To be honest i dont know enough about it all and yes hopefully i will find the right person to help me. X
Thanks so much for sharing, this is something I will definitely check with my dr as well... All the best with the PIC clinic...
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